We are all heartbroken by the news of the passing of Chris Johnson. Although we all know how MND ends, it never gets any easier to bear. 

Chris was a core member of our United2EndMND campaign team. It was his work with Sajid Javid, the then Health Secretary, that got us a real foothold in Government. He came to meet Chris in Westminster in September 2021 and finally we had a senior Government minister who ‘got it’ – not only the case we were making but the sense of urgency. 

Chris was really the best of men, his kindness and decency was obvious from the minute you met him. He wanted to help defeat MND and he certainly did that. He will be a great loss to his family, of course, but also society as a whole has lost one of the ‘really good guys’. 

We will all miss our discussions with him on campaigning and the laughs we would have together. His absence will be felt keenly but will renew our determination to fight for a different future for those diagnosed with MND. 

Our thoughts are with his amazing wife, Sharon, who has also been such a great campaigner and fundraiser, and with his children.

Your friends Lee, Dave, Nicola and Emma.